Have a Heart: NMF Statement to SSA, updated

Back in the mid-1990s, the Marfan community was excited that Marfan syndrome finally made it into the Social Security Administration’s official list of disabling conditions.

However, the listing was for untreated aortic dissection. In other words, your aorta dissects, and you’re eligible for Supplemental Security Income (SSI) or Social Security disability for the day or so before you die or have it operated on. OK, there are some people who have dissections that they have to live with for indefinite periods of time, for various reasons.

However, the point is that it’s a very limiting criteria. This is a written statement to the SSA, dated, November 28, 2007, by one Dr. Josephine Grima, representing the National Marfan Foundation, asking the SSA to take into account the systematic effects of Marfan.

The following two sentences sum up my life:

Each major “incident” translates into non-productive years, disrupted or discarded careers, lost wages and assets, and an emotional and psychological disconnect and alienation from society. Couple this with the specter of early death and the resulting angst and pervasive depression that ensues further
debilitates the patient.

I most firmly believe that the worth of a person has nothing to do with how much money he or she can make, or with utilitarian contributions to society. When it comes to my personal life and spiritual life, I am quite happy. “You’re rich in the economy of grace,” as a friend recently said to me.

However, when it comes to survival in this cutthroat world, it’s a different story. I’ve worked hard all my life to always come just short, always not having quite as many qualifications as other candidates for scholarships, awards and jobs, always getting high praise for my intelligence and work ethic but never quite able to advance beyond a basic level job when I do have work, and always getting the riot act when my disability invariably gets in the way of my work.

A year ago, I began working on the _Hide Me In Your Wounds_ CD in the hopes of taking my career into my own hands. Self-marketing has proven challenging as a I have to work so many hours as an adjunct college instructor to make ends meet, and I thought I could have success with the “guerilla”/”buzz” marketing approach through my blog and Facebook.

Please download Hide Me In Your Wounds today.  The more copies I can sell through direct marketing, the more money and time I can spend on advertising, publicity and working on getting some of my other works published.

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